June 6 to August 18, 2004

 

6-7-04

Recently I heard that cancer could have been cured years ago but the secret is being suppressed.  After all, it is an illness that is a big business.  What would happen to all the radiation and medical oncologists?

 

6-8-04

Sorry to report some terrible news; I hadn't had an email from Larry Koonce
in many weeks so I called his home before.  He was the Texan thymic
carcinoma patient we 'met' via our website [June, 2003].  His wife answered as I was
leaving a message and she told me he died last night.  It was just too
shocking to hear this since he had been doing well and his tumors were down
to pinpoints he told me.  But he got fluid in the lungs, needed oxygen and
had an infection. His funeral is Thursday. We only discovered each other a
year ago and he was in our lives too short a time.  Such a terrible disease,
as we too well know.  I think they gave him too much chemo as his wife said it wasn't the cancer that killed him.  His drs. were very aggressive.  Maybe not always a good thing. I think it was every 4 to 8 weeks for 2 years.  We both have the same cell type from our biopsies [very rare - lymphoepithelial]. 

So my scan gave me some sort of a reprieve, and that is all it is, another 2
months to live it to the max, depending on the energy my body will give me.
We try to take it all with a grain of salt.

 

6-10-04

There are only so many nice beach days; that is our motto.  We often talk about that with the circle of people we sit with on the beach here - we say that you don't know how many summers could be left or for that matter, how many good beach days are in each summer.   So take advantage of your place as often as you can. 

 

But the Foundation had some progress, too.   Dr. Kaiser at the University of PA. Hospital is a world class thoracic surgeon and he agreed to be on our board.  He developed an out-patient surgery for thymomas [if they are small and haven't invaded].   This is in time to help a few patients that have written the Foundation.  Like a dentist with this emailed the other day from CT.  so we'll link the 2 together.

 

Your excellent idea for a rare cancer group  could be beneficial to those involved.  It is heart warming to think that you would create so much for such a small patient base. You told me to be honest...and I suppose others in this situation would say the same.  Ideally I would be interested in attending as often as I could.  Though while I am on this thrice a day injection therapy,  it is hard to set up a schedule and  commit to other activities at this time.  I'd feel so bad if you set this up and I'd miss the speaker. But I guess you have this with all groups - it is so dependent on how each of the individuals feels on any given day.  That must make your work such a challenge for planning any program.

 

6-11-04

I try to handle each moment as they unfold, keep as busy as my energy will allow, and try to work on some solution. Handling my own situation is easier than hearing about others though -  but to give up, gives the enemy bragging rights. Can't do that!

 

Well, now we need to find a urologist for Alan - his P.S.A. value rose too much and the primary wants him to check it out with the specialist.   We are trying to stay calm.  Getting old sucks, as you are finding out too, after your visit.  I don't know how we are all in our 50's yet there are people [like your mother and Alan's] in their 80's doing quite well.  If we are having this merde now, what will happen later.  I shudder to think.  Maybe I better go pop a valium.  And eat some chocolate.  ANd have some cookies.  ANd some ice cream [not yogurt - the real stuff].

 

6-12-04

I have had some coughing problems that started about this time last year after the lung surgery and have gotten no better.   I have not been able to shake them.   The choking can be bad and unrelenting at times.  I think that all the radiation plus the 2 surgeries and now the drugs I have received  have weakened the chest area and immune system.   And I have always been very chemically sensitive but now  I am allergic to whatever it is that comes near me.  The dr. told me  he sees nothing in all the films that would indicate why I am coughing.  I think that all the drugs I have received to fight the big C have weakened the ole immune system and that is why I am allergic to whatever it is.

 

SO when I start coughing I have to get water, a lifesaver and even a heating pad to stop it immediately or I start to gag. That I hate.

 

The injections are becoming a part of our lives.  Though the other day I bumped my shin but the black and blue mark spread to about 6-7 inches.   I need to have some coagulation studies next time my blood is drawn.

 

6-20-04

 

ALan's urology appointment for here at the shore was canceled and re-scheduled [he may cancel them this time].  We made one for Phila., a Dr. Malloy at Pennsylvania Hospital. 

 

6-21-04

The problem is my 2nd dose of the day is between 5:00 and 6:00 [depending when my first one of the day is].  I often fall asleep for an hour afterwards [and generally just feel light-headed, dizzy, the blahs].    These needles dictate the day and it is not something I can get used to but have to remember the bigger picture.  The local reaction precludes me putting clothes on it for an hour also - it puffs up pretty high, gets red for a 3 inch radius and burns. 

 

It is hard to believe that in 2 weeks it is time for my follow-up scans so they can evaluate these injections. 

 

6-22-04

May we find the genius now, to  give us back our health.  Now that the Foundation has raised some funds, we are looking for prestigious doctors with labs available.  Two have already applied for a grant to do research for the Foundation. Progress - at last. We'd love to take on both projects but raised only enough money for one.  We need to find a way to raise $30000.00 easily and quickly.

 

6-23-04

Try not to get too upset about the news.  Unless you get totally involved, you can't do much about it and you only compromise your immune system.  Stay calm and cool and think of nicer things.  Watch less news as you get older and don't jeopardize your health.

 

6-24-04

Today - for me - was not great.  I woke up with a back ache.  I think the drug makes me more susceptible to muscle spasms.  It is the 2nd one in 2 weeks and it was a rough one.  I couldn't even open a drawer or window without setting it off.  The type of pain, where you want to be left alone and just die.  It is left side, very low, like hip level.  I don't think it is a disk...more like a muscle spasm [hot compresses help for the moment and so do enteric coated aspirins].  

 

6-26-04

That scared feeling you have about the future is one we all know about.  What you battle each day is beyond words- and with the wrong choice of words, the drs. can put us into a deep abyss.  I so admire your strength and courage as you go thru this new round of treatments. Great people do great things so I am praying the drugs work soon and target those evil cells.

 

6-27-04

 I know what you mean about 'tomorrow it will be better." I hated when people said that to me. They have no idea. Or they'd say, the worst is over.  Another lie, like the check's in the mail.  I have become supersensitive when people who have no clue start trying to give their brand of encouragement.  It drives me crazy.

 

6-28-04

Thank you for your moral backrub.  It is helping.  If I don't stand or sit too long and use enteric coated aspirins and the heating pad, I don't have to stay in jammies.  I put on shorts and try to be a productive member of society.  Hahaaa. I'll make the chocolate pudding tomorrow.  Today I treated myself to a Dunkin Doughnut chocolate filled variety.  Inspired by one of the drs. on our board from England, I will chow down.  This is what he sent me.  Complete opposite of American medicine in most places.

 

"I'm glad also that you told me about your gallbladder. I might not be able to help diminish its enlargement, but I can stop the sludge becoming gallstones. While you may be right that the drugs you are taking don't help, it could be because you are not eating enough fat.

Fair, fat and forty. That is the general perception of someone with gallstones. For this reason gallstones, often found in fat people, are usually attributed to a diet high in fats. In fact this is the opposite of the truth: Gallstones are caused by eating too little fat rather than too much.


       Fats are not soluble in water. Before dietary fat can be digested, it has to be emulsified. Bile is used for this purpose. The liver makes bile continuously and stores it in the gall bladder until such time as it is needed – fats in the gut. However, if a low-fat diet is eaten, that bile remains in the gall bladder. Gallstones are formed when the gall bladder is not emptied on a regular basis. In people who continually resort to low-fat diets, bile is stored for long periods in the gall bladder – and it stagnates. In time – and it is really quite a short time – if the gall bladder isn’t emptied, a ‘sludge’ begins to form. This then coagulates to form small stones which then become bigger. The speed with which this happens was dramatically demonstrated in a trial at several American University hospitals.[1] None of the subjects had any sign of gallbladder disease at the start of the study. However, after only eight weeks of weight-reduction dieting, more than a quarter had developed gallstones. Where they were fed intravenously, half developed gall bladder sludge after three weeks, and
all had developed sludge by six weeks. Nearly half of those who developed sludge also developed gallstones.


       Missing breakfast may also increase the risk of gallstones. In a study of French women with gallstones, it was found that they fasted on average for two hours longer overnight than women without the disease.[2]


       So, eating fat prevents gallstones; low-fat dieting is the cause.   
       The pain that someone with gallstones gets is when these are passed through the bile duct with the bile in response to a fatty meal and get stuck.


       So, it is a low-fat diet which causes the gallstones, but it is eating a high-fat diet that makes them apparent. If you eat a low-fat diet and never eat fat again, then you won’t get the pain, even though the stones are there. Thus the doctor who says that the gallstones were caused by high-fat is actually saying that the symptoms were caused by the fat.


       If someone suffers from gallstones, a low-fat diet ‘prevents’ the symptoms, so doctors often suggest such a diet. But it makes the cause of the symptoms (gallstones) worse.

The best sort of fats to eat is the most saturated you can get: coconut or palm oil or animal fats. This is because they strengthen the immune system, whereas polyunsaturated fats and oils compromise it
."

 

6-30-04

So you are on to my stubbornness [which runs thru my life, whether fighting for my health or just fairness in all situations - boy do I have a story for you. Always the trouble maker [it actually finds me].  Had to address 2 serious concerns with our new mayor and commissioners here in Longport.  Two looong stories. But am making progress. Had to switch hats from Foundation Barbara to Political Barbara. It only involved writing letters.

 

7-1-04

Alan felt fine the other night...thanks for asking.  He has been careful with his left knee since hurting it last year so he avoids any exercise that will twist it.  ANd then he gets too worried about me and watches me carefully. If it were the reverse, I'd do the same, I know.   Before we got to class I had just had an injection and get a bit off for an hour.  But I really wanted to try to do something.

 

We are still auctioning off items on EBay and slowly increasing the funds we need but not in a super quick way.  I bought a lottery ticket for tomorrow evening ---it is at $280 million here in N.J.  I figured this would go a very looong way with the Foundation. If we win...hahahaaaa - you know someone will win and be so inept that they will be bankrupt in a year.   The typical lotto story.   I have big plans for the money ---we need an executive director to begin with

 

Right now we have physicians reading the proposals and they will help us decide which proposal is the best for all of us.  The physicians are on the Foundation Board and are awesome in their abilities.

 

Alan told you about my scary eye episodes 3 years ago.  The few times it happened were frightening beyond words.  We were walking towards a stop sign, and I couldn't see the 's' and the 'p.'  A man was coming towards us and his 'legs were missing.'  Once I was in the store and on the price tag, could not see the numbers to the left of the decimal. I wonder if it were the tumor pressing as it got bigger.

 

7-2-04

Gilda's has been phenomenal to us.  They have free reiki, tai chi, yoga, dinners, flower arranging etc. Every item is donated for the patients. This week Christine Perillo is coming to make a bbq for anyone who shows up.  Last week they had Marie Savard.

 

You asked if Octreotide is used for regular lung cancer.  I think if the patient has the Octreotide scan first and IT LIGHTS UP, then they can administer it.  Certain tumors are susceptible to it and the test will show that first.  They did not expect mine to light up but it did.  It was a longshot.

 

My scans are Tuesday and I will have to make the g.i. appointment for soon after; I have been procrastinating.  I sometimes feel like I reached my limit of drs. , RX's, and the whole mess.   I like to have stays of execution. I have lost about 10 pounds but I eat my share of food.  I think the Octreotide also changed my taste somewhat and not a lot appeals to me.

 

Oh yes!  Before the scans I get so hyper, I need valium.  I also find it even hard to call and make the appointment for the scan because maybe, it makes it too real that I have to go thru it.  Then after I survive the scan, I am a basket case until I find out what it shows.  Your life can change in an instant, when you get the results.  Everyone loves status quo - don't rock the boat.  But if they deliver bad news, then you know you are in for hell.  That is what causes the anxiety.

 

Gilda's had sessions on how to handle pre-test anxiety - they had nurses, drs., specialists come in and it has helped a little.

 

This is a big holiday weekend here,.  The towns are filled to overflowing with visitors coming to the beach. Mobs and mobs of people everywhere.   It seems like each year it gets more and more.  Summer is now in full swing.  Now is when we start to look to the Fall when it is less crowded and quieter.  We took our cue and went over to Ocean City the other evening to meet friends at an ice cream parlor; this weekend would be no parking.

 

7-4-04

 As you know, I understand how enough is enough.  Good health is such a rare and wonderful blessing.  Luckily you and I have terrific husbands that help us carry on - they are our heart and soul.

 

 Before I tell this incident, did I tell you that exactly 3 summers ago [right before I started to not feel good], I was on the beach in my beach chair talking to people.  After our friend's son walked away from talking to us,  some kid and his stupid mother were playing ball on the beach and it hit me in the throat and everyone heard that crack. They thought it was my chair arm made of wood and breaking. It was my neck being hit with the damn ball.


It was in the spot where the tumor grew.  I always think of that isolated incident and wonder if  the thymic tissue was sitting there, all nice and benign, and that trauma, changed the cellular structure. I guess that's as good a theory as any.

Well, the other day 'lightening' struck twice. I kid you not. I am freaked out and fuming and very depressed. This sicko kid was playing Frisbee near us and our friend [about 65] told him to move further back on the beach.  Then the thing landed near us again and I said something to him. He made an annoyed face so I yelled at him and told him not to dare look at us that way.  Then a little bit later...WHAM...right in my right back, I felt and we all heard a whack. The idiot father threw it in the back of my chair. It is the place where my lung surgery was and I am still in pain from the 'punch'.

 

Alan and I went over to him and said I bleed easily due to the drug affecting my liver and we wanted his name and number in case anything happened. I felt that since this an accident of sorts, like an auto one, his homeowners insurance may be needed if I were hurt. After all, this was an 'accident' [though now I am not so sure he didn't do it maliciously for us yelling at his brat].

 

He didn't give me the number so I went over to him with pen and paper and the she-blob he was with called me a bitch and other names and told him not to give it to me. I said fine. They don't live here - were visiting from Phila. The shrew said not to call the cops, THEY WERE the cops. Yeah, and they were drinking beer [not allowed on any of the beaches - concealing it]. They had no beach tags. Real trash. AND FINE EXAMPLES TO SET FOR THEIR KIDS!  It is ok to drink where it is illegal, it is ok to curse obscenities, it is ok to break the law...

 

Went back to my chair, used my cell phone, and 2 cop vans drove onto the beach. Quite the scene.  The offenders were sitting there laughing AND YELLING CURSES OVER TO US till this happened. But we all witnessed how the she-blob took all their beer bottles FIRST to the trash can.  The cops know I am on the domestic violence force and I told them this was beach violence and I was battered and in pain where it struck me. I wanted to report this so it was on the record in case anything happened [you never know with me, right?]

 

Later another couple who live here, THAT we know,  came over and told us that THEY TOO told these pubic lice that there is plenty of sand and to move their game back - they had a newborn in a carriage.  SO we have witnesses.  Another couple sitting with us saw and heard the whack.

 

Can you believe.  I have been depressed ever since - it is a little pleasure to break up my day and go down and spend some time at the beach and just sit and enjoy the air and the view.  Truthfully, with people like this, now I don't feel like going. Alan wrote it up for the chief of police today. There is more to the story, of course.

 

We respect police officers too much to argue with them in public, even a young relatively new officer,  but we and others were not pleased by his attitude and actions.

 

The man who hit me then spoke with the officers. The officers informed us that he was an off-duty detective from Philadelphia and that he was “just playing with his kids.”

 

I commented that a police officer should have known better, and HERE IS WHAT TICKED US OFF, the  officer commented. “What? To play with his kids?”

 

It was then I realized that the officers were extending a courtesy to a fellow officer and that it would do no good to explain that his group.

 

Alan decided to put the series of events in writing and  sent one of his marvelous letters to the police chief.   He  delivered his very potent letter in person to the Chief.  The 3 of us had a very in  depth conversation.  We delivered copies of the letters to each commissioner and the mayor.  The chief was VERY sympathetic since 2 of his parents have had cancer treatment and he is raising his sons in the total opposite way of that slime ball from the beach.  The chief told us that he DOES NOT even cater to any professional courtesy to any other type of law enforcement agency.  

 

Beach Bashing, continued.  Everyone is on our side; this is an easy one.   It is turning out to be a big deal.  They are all incensed.  This morning, bright and early, one of the Commissioners called us and he was so sympathic.  He kept apologizing and Alan told him he did not have to.  He read our letter last night and was outraged and couldn't believe this happened to us. He is addressing this with the beach patrol chief, the police, and the public safety department. Now we sit back and let the trailer trash fall.  There is something to be said for a very well written letter, as only Alan can do.

 

I am trying to meditate and get over this.  Our friends insisted we go to the beach again today and we were sitting about 30 feet from the offenders.  They left us alone; I wish I had had a camera, though. Today they were openly drinking beer.  Nice message they teach their kids - number one, it is ok to curse, number 2 it is ok to break the law [coming from one of filthadelphia's 'finest'], and number 3 it is ok to drink alcoholic beverages in a zone that it is forbidden.  I will take a camera.

 

 7-6-04

It took a lot to get through those tests today [another story in itself] - 3 hours worth of scans - and the techs are not as nice as the ones used to be when the center first opened.    The original radiologists were also much nicer; the one on today really had an attitude.  It makes me wonder why since I only learned last week that FINALLY another center near here will give PET scans so AMI won't be a monopoly anymore and will have competition.  The next closest place is phila.-they should really try to be nicer!

 

So I don't know if she faxed any of my drs. or called them with the results.  I gave her a typed page with their name and number and whether she took it seriously or not, I don't know until I hear from a dr.  I also wanted to give her the ultrasound report from my last visit at the gyn., on the Nabothian cysts I have [which last time she  reported  out as other growths, causing a scare - remember].  

 

We waited until I didn't feel good [I was so hungry, not having eating since yesterday afternoon and it was already 1:30  You'd think they'd understand and take this into consideration.  So I found her office. I finally after waiting over an hour to see her......found her office and barged in.  I felt entitled after being ignored...this won't go untold to the owners.

 

She had my pet scan up on the screen and all she had at that point was that the intensity [brightness] had increased by one number, from 8 to 9.  Not good, but am trying not to worry yet until the entire scan is read along with the CT scan.   So we sit and wait.

 

Meanwhile Alan called our insurance company to see about covering the drug that Dr. Check wants to try on me and they are looking into it. It was approved by the compassionate use committee and then the F.D.A. - months of work on everyone's part [the difference in doctor's offices].

 

7-7-04

My follow up scans yesterday were discouraging.  Some of the tumors had increased in size and the intensity [brightness] had increased by one number, from 8 to 9.  Not good.  The oncologist  called this morning and said the scan was worse than last time and to stop the Octreotide!   As much as I am so keen on not injecting myself, I didn't want to stop for this reason.  Some of the tumors are larger, though not all.  Some are brighter, in intensity.  She doesn't t go for the inflammation theory.  As much as we like her, at times she is quite brutal.  She feels it can only be cancer. Because that is also the way the reading radiologist writes it. Biased.

took me off of the Octreotide and is looking for something else now.   I read the report again  and found that 80% of it seemed ok.  Four tumors were the same size and one was smaller.  It is just this one damn al quaeda that grew 40% larger that started this chain of events.

 

We have been very depressed today.  I don't think my valium does anything to help that. Monday we come up to Phila. to see her and we also see Dr. Check. He has approval from the F.D.A. and the compassionate use committee for me to start the mifepristone and all I need to do is sign the consent forms. Then he'll order the drug. He has had a staff member working on this for months. 

 

Our insurance co. wants him to write it up as a trial and maybe they'll pay for it.  Who knows.  We'll lay it out and then worry about it. Dr. Check has gone out on a limb for us and feels this drug may work.  He assigned one staff member to do all our paperwork and keep on top of getting this drug. She is remarkable and also tries to instill encouragement in us.  His office hours end at 5:00 on Monday but he is keeping the office open to see us at 6:00.  So many details but just need to go and rest now.

 

We are praying for a total and permanent recovery from this nightmare.

 

7-8-04

TO: Lori …If it seems to be yelling, then take it that way.  I am yelling from my soul.  I tell you horrible cancer news and you don't respond one word to it. Not a thought of support.  First read all the RED I wrote and then your answer.  You totally ignored my email.  That is why I sent it twice - I thought you didn't receive it because something so catastrophic surely deserved a sentence.  Strangers wrote me caring email so I felt let down that you, who has been here for years,  ignored my email TWICE.  This is not the first time this has happened.

 

Wherever 'those' people are, always coincides with my path.  I guess it has been pre-ordained since God knows I won't let them slide!  Just my lot in life; we have learned to accept it. Nothing ever surprises Alan anymore. 

 

You were brought up the way I was.  If I sat on our front steps as a little girl coloring or playing with cut-out dolls and my voice was a decibel too high, my mother pulled me into the house and taught me to be quiet. 

 

 But we have this mother across the street with 2 boys and when they play outside, they are screaming the entire time at the top of their lungs and it goes on for hours. 

 

7-9-04

We heard from a man in Trieste Italy whose wife has this and we have sent emails back and forth.  Today he told me that before all this started with her, their kid accidentally, kicked her in the sternum [where the thymus is locate].   We have to poll the other patients; maybe this is the common thread we are looking for.

 

Boy, do I know what you mean about getting your life back.  I can taste it but it hasn't happened yet in over 2 and a half years.  This week was the perfect example.

 

I spoke to Dr. Check's office and there is one woman, very religious, who feels this all happened for a reason. You know that master web God weaves.  If this week's events didn't happened, I wouldn't be put on the drug.  They feel this drug is going to help a lot of people; I am the guinea pig.  If it works, then the other thymic patients that we met on the website will get help. Mmm...maybe Larry Koonce is 'up there' leading 'this parade.' Mmmmm????????????????  I hope there are a lot of spirits with me by now...Larry and some others up there helping with this big battle.

 

Yes, I agree how lucky I am with Alan.  He always amazes me how smart he is - things have always come up since we have been together and somehow he is able to find answers, even before all this - the most serious -  merde.    I really shouldn't ever complain about anything; I should just endure whatever is thrown my way since I am lucky in other ways.  Yes, Alan is my treasure from God.

 

7-10-04

Know what you mean about the movies; we wait till they come out in video.  First, I can't take a chance of catching any infection [recycled air and I am immunosuppressed from all the treatments].  Second, usually I am the one who gets the kicking kid or the smoker [yes, we all know it is against the law now but there is always ONE], or the person who just ate 10 cloves of garlic...well you get the picture.  Too much of a hassle.

 

 It was a very depressing week - I don't want to eat or do anything.  Today I am forcing myself out a little; but it is hard to want to do anything.  Usually Alan says where do I want to go and I have a list; in the summer when it is nice, there are too many things we like to do.  But this week I just wanted to sit on my sofa - or patio. Never ever was like this before.Today we sat on the beach [we use it as our living room] and many friends stopped by - off and on - for 3 hours to talk; it was good for Alan to have some guys to pep him up.  We just have always loved the jersey shore - and we have been to beaches all over the world.  This is the best right here.  Maybe because we know people and it is more social than sitting in the sun.  I have to stay under an umbrella so it was nice and cool today. Our visitors were such a comfort. 

 

7-11-04

 We were sitting next to neighbors on the beach when I was talking to you and the son-in-law was saying to his mother-in-law that he doesn't believe in forgiving anyone.  I didn't hear the beginning of that conversation but he was loud and emphatic when he said that so I got distracted and of course I feel strongly about that and had to add my .02 worth of support to him. 

 

 I would like to be able to forgive people; Deepak Chopra says to do it all the time.  But how do you let go the image of what someone did to you [like s. or that bitch Ann last summer -she didn't come over because it was raining, remember].  I just would prefer not to see those types again. I think it must be a gene we get that drives some of our emotions.  Like sense of humor - got that from SBW but not the forgiveness gene.

 

7-12-04

Alan’s urology appointment for here at the shore was canceled and re-scheduled  so we decided to cancel them this time.  We made one for Phila., a Dr. Malloy at Pennsylvania Hospital. 

 

Dr. Malloy at PA. Hospital examined him and said he'd recommend a biopsy which is not in an easy or comfortable place so they put you to sleep.  The urologist said he felt something hard and something soft, and we forget which is good and which is not.  But nevertheless we can't help but be very nervous. He'll schedule it for within the next few weeks and save some of your prayers for him.  This is really all I can think about.

 

The Penn oncologist gave us the bum's rush; she came in and said my appointment should have been changed by her staff since she had a meeting across town [no one told us before we drove 2 hours up there].  We had 3 pages of questions regarding the scans and various new drugs plus Dr. Check's drug.  All she was concerned about was making us understand that Dr. Check's drug was unorthodox and has not been part of a trial and blah blah.  But it has been tested at a few places.  We sent her the literature - who knows if she read it.  Time will tell who is right. It better be Dr. C.!

 

7-13-04

 

Tomorrow we go back to Dr. C.'s and pick up the drug.  But his tech called and said that somehow ABC found out and want to interview him and me.  I am not thrilled; don't want to jinx this.  Seems another of his patients works for ABC and overheard etc.   I'll let you know what happens.

 

I have know him for decades.  One of my former students worked for him.  He started out in cancer research, went into endocrinology and then ob-gyn.  Specialized in infertility. He has such stories to tell.  When you have your appointment you could be there 3 hours.  He is very thorough. He has people research your symptoms. One of the drs. on our board, taught him in medical school. 

 

7-14-04

Speaking of Larry, did I tell you so many people stop Alan and say he looks like Larry David.  Alan  sent him a letter but David did not answer.  Alan put photos of himself on it and said "I am not Larry David" and he made a funny letter out of it. People in the dr.'s offices or a store will walk around him and point and then ask Alan if he is him.  You should see it.

  

We had to be at Dr. Check’s office at 1:00 today and they shot me swallowing my first pill. Hope it aborts my cancer pronto.  It will be on the national news.  Egad.  A long day again. 

 

Esperons, que sur cette Jour de Bastille, que nous tuons tous les "al quaeda" de 2004 dans ma corps.

 

How's that rhyme.

 

As for the cough, it is so hard to ignore it since the cough is here all the time, like a persistent tickle.  Last night I couldn't sleep because of it and I was coughing so hard, I was gagging.  Had to take benedryl.  Use a heating pad. It worries the hell out of us.

 

A pill is so much easier than 3 injections per day. Of course you are right - at least there is something to try.  When I was first diagnosed, there was nothing except cut or burn.  If this doesn't work though, we got to go to 'burn' unfortunately; having gone thru it once, I don't look forward to it so I will have to WILL this drug to work.

 

7-17-04

Had a situation today with the lab at Univ. of PA. where my blood was drawn on Monday. We emailed the chief pathologist.

 

What we found out from my dr. was many of the tests ordered were missing because they were not done by the lab.  What  upset us more than the failure to do the tests is the fact that they [the lab phlebotomist and technician in that blood drawing area] said they would do them all and then did not. We had multiple scripts from a few drs. and they made a big stink at first.  I told the lab person that if they could not do them, we would have ALL of the tests done elsewhere at a later date and send the results to the dr. [the chief doesn't want business taken elsewhere].   I brought all my scripts from the specialists because I am a firm believer in minimizing the number of sticks and preserving veins.  I save them up and get stuck once.  The staff could not handle it. Alan and I were fighting with them Mon.

 

We didn't find out till days later that the entire lipid panel my cardiologist wanted was omitted and also the coag studies another dr. wanted weren't done. The lab manager found my blood and hopefully by Monday, the results will be done.

 

How many people would go to this trouble. This is the last thing we needed this week.

 

Alan’s biopsy is scheduled it for July 27th at Pa. Hospital.  

 

 I only want him to be fine and this be nothing.  It is not the test we fear anymore...but getting the results.  We have to be there at 6:00 A.M. and leave here at 4:00.   The nurse said it takes a day or two to get the results.

 

7-18-04

A bit tired now.  We went to the Longport town picnic tonight with a couple of dear friends. I found it okay - guess my heart wasn't in it this year.  Usually I love it.  Snow cones, Philly soft pretzels, cotton candy, bbq-ed food, d.j. & a view of the bay as the sunsets. Felt very blah and depressed. Really pray Alan's biopsy comes out fine. This is putting me over the edge.

 

 So far, some queasiness and a few mild cramps, fatigue, and my hair is coming out a little [that could be my burnt thyroid that isn't regulated yet].  And increasingly more hot flashes - last night they'd wake me up about every half hour.

 

7-20-04

  I can feel and I suffer for and with you.  Seems to be our lot.   It is a mystery that the newer methods they are trying on us, aren't perfect. Even a little perfect.  Why is this country murdering us all - the solution is at their fingertips. 

 

7-21-04

As Tuesday approaches, we get more hyper.  What made it worse today was the former mayor of our town was just diagnosed with prostate cancer -  they missed it on his biopsy and now it is extensive.  A very nice man - his best friend was walking by and told Alan the story [how kind of him - I wish he had waited  a few weeks].  So today we walked to the beach and sat with some friends for a while. It felt good to be with others, talking about nothing.

 

7-21-04

That's my job on earth - life's court jester! 

 

7-22-04
First I must say that when one gets used to doctors like Jerry Check, Luther
Brady, and the rest of the team I see,  one gets spoiled so a visit to this
Peter Constantini makes you lose your mind.  I have been blessed with the
greatest drs.  Their research, methodical choices, and their caring natures
are exemplary and consistent so to us it has become  the norm.   We take
them [or email them] articles or statistics and the drs. in turn are
appreciative to have more information.  Many became members of the
Foundation Board.  They are  our most trusted and knowledgeable asset
throughout this ordeal.  They really are doing  their utmost best
considering how rare this is.

 The thoracic surgeon wanted me to have pulmonary specialist to see if maybe
we can improve my constant cough.  What a disappointment this clown is.

He was a pharmacist at first, then turned dr.  He went to school at P.C.P.&
S. where I taught for 5 years so we knew common people.  He seemed
supportive and caring at the first appointment and we had a discussion about
our mutual experiences at P.C.P. & S.    It has gotten to be, though, way
too much work to 'fight' to come and see him.   His staff portray a terrible
attitude towards the patients in all dealings with them.

In  March I was too have an appointment for a methacholine challenge testt
[to see if my cough was asthma].  It  had to be canceled because of the
incompetence of someone in the office; they never gave me the pre-requisite
instructions for the  test. I would not have known there were any
instructions that would preclude me going about as normal the day before the
test --- except for the fact that the office called to confirm.

No instructions came faxed, after leaving several voice mail messages.
Eventually I spoke to Terry, who does the test, and she sent them over .
But they were not faxed in time, that is until the  day of  the test.  That
was too late. I had already unwittingly had ingested the substances that
were to be avoided.

Instead of immediately re-scheduling me, I was left on my own by the staff.
I had to chase down the person to re-schedule my appointment.  I felt after
this snafu, some priority should have been given to me to get me in as
quickly as possible.   I finally, one day, left a message for scheduling and
when I never got a call back, after many tries, I called again on May 7th.
That is how long being ignored had lasted. Two months.   Any one else would
not have persisted and gone elsewhere already.  The next available
appointment was for July 8th. Peggy said no one told her about my messages.
She couldn't do any better.

Well after waiting 6 months for this appointment, it was a rude surprise
when the staff called to cancel the appointment.  The dr. was stuck in
Europe but I felt that since I had been put to the bottom of the list so
often, and ignored, the staff should have given me the very first
appointment when he returned.  They could not give me an appointment and
said they'd call back.  They did not. Again I called and spoke to the office
manager who had an arrogant attitude and spoke over me the entire time.  She
told me, among other comments, that "pulmonary patients come first."  I have
been wondering what I am then?

Anyway, today started out with them taking me a half hour late and Terry
said Alan could not sit in the test room. She wouldn't explain to him.  When
we got to the lab, I insisted on knowing why?  She said he shouldn't breathe
the vapors the machine puts in the air.  I asked how she can sit among them;
she did not put on a mask. She said she's been tested and they don't affect
her.

During the test she opened the door. I felt my privacy infringed upon since
I had this tube in my mouth and a device on my nose and other patients were
standing out there. I asked her to close the door and she said she doesn't
want to inhale all the vapors.

Too many contradictions.  So then after the test, she insisted I sit in the
lobby and wait for the other patients to be taken before I got to an
examining room. I explained how I was hungry since I fasted since yesterday
and was lightheaded etc. and I HAD ALREADY waited  my turn at the beginning.

 I was thrown out to the lobby and Alan told me a horrible story.  A lady
drove up with a frail 90 year old man and needed help to get him into the
office.  She went to the window; no one came to her.  She called in that she
needed help after 5 minutes and the poor man was in the heat. THE STAFF
walked away.  She called in to come and help her.  They pushed out a
wheelchair.

She said she needs help and the staff refused [insurance regulations they
said].  ALan was floored and went out to help her.  She told Alan the dr.
called the man's insurance company and said never to send his son in with
him again.  He asked too many questions. Alan told her I kept a log and
would be giving it to the dr. at the end of the visit.

I then said to her that maybe he has no idea the staff treats patients this
way. She said, "He knows."  I guess I am naive. I couldn't imagine a dr.
allowing this.

Well I was the last one back, he examined me and explained the results.  He
said it was probably asthma and he prescribed a type of inhaler and that the
nurse would come in and show me how to use it.  When he was leaving I said I
had a log of how his staff treated me and he erupted.  He said, "I know the
whole story.  I only get one complaint a year.  If you don't like this office then go to another doctor."  

Then he did the unthinkable, as if this all isn't unthinkable enough.  He picked up the RX for the inhaler and said I can go to another office and get it.  I said I don't think so [for the RX - yes, I will find another pulmonologist].  I said my insurance will  be told not to pay for an office visit that is not completed because the dr. walked out but more importantly if I am left without the RX until I see another dr. and I have a medical problem due to not being on the drug, it will be his fault for withdrawing the RX. So he gave me the RX and walked out.


Now I need to get my records out of there and the test results. Jumping through hoops is very demeaning.

 

7-23-04

I just can't believe how fast I was vindicated [within 24 hours - usually it takes years].  O.K. - wait till you hear this.  I feel so close to God right now.  I do believe!

After dinner I was reading our local weekly where they print 'the police blotter.'  Lo and behold, I see that the Margate police arrested a Peter Constantini, 55, on July 19th!!!!!! For simple assault.

Being on the domestic violence team I have a link into the real scoop.  SO I
called my liaison tonight [I am on call anyway till midnight] and he is
checking for me to see if it is domestic violence or what.

 IT IS SO FUNNY WHAT GIVES ME BLISS.

7-24-04

Yes, we have heard about the vaccines.  Everytime I mention it to the various drs. they say 3 things.  One is what you mentioned - it is when all else has failed.  And 2nd, it is still experimental.  They drive me crazy. And the third is it is not for your cancer.

 

I forgot to tell you that the tech giving me the test would NOT tell me what she was giving me.  I should have walked out.  Also today we noticed that the RX script he took back and then I insisted on having, he CROSSED out all the refills and changed his original number of 4 to 1.   I keep getting more on him - he had better beware.

 

7-25-04

 I found out today at this 4 year old's birthday party that he has a few ex wives.  One of the drs. I spoke to said he bets little petey was probably out for dinner and bumped into one of his ex-es and took a rammy.  We'll have a lottery and see what it is.  Nancy called the dr. "Mengele."  He has a short fuse.  He is also short and has a napoleon complex. The drs. all want a copy of the police blotter.  A few are on the county medical board.

 

The tech also refused to tell me what was in the vapors.  Now, looking back, I should have left.  I asked since I have a lot of sensitivities and she absolutely refused to say what was in them.  I'm an idiot for staying.

 

Dr. Jerome Check, my physician, has written about the possible immunotherapy benefits from a progesterone antagonist.  A fetus inhibits NK (natural killer) cells through the progesterone-
induced blocking factor (PIBF) (a protein fraction of 34 kD) which is produced by progesterone-influenced lymphocytes.  This has been proven by the use of mifepristone (RU486) to stimulate an abortion. 


Gamma T lymphocytes  produce PIBF and Dr. Check postulates that  their production by tumor cells may be one reason the body's natural  immune system fails to kill the tumor, just as PIBF protects the fetus.  In limited trials, mifepristone has been shown to be effective in breast, ovarian, and endometrial cancers. In fact, M. D. Anderson Cancer Center is now in a phase 2 trial right now of mifepristone for endometrial cancer. 

 

 Even though thymic cancers are  not hormonal, Dr. Check feels that Barbara's lymphepithelial-like thymic carcinoma may be using PIBF to defeat the NK cells.  In fact,  even tumors in males exhibit PIBF.  Since PIBF is not present in normal cells, an antagonist like mifepristone should not effect normal cells, so side effects should be tolerable. There is also information that the mifepristone and the messenger RNA have a link.

  

7-26-04

Update on the Buffoon un-doctor:  a neighbor, Roy, was biking by our house today and stopped when he saw Alan outside the garage. During the conversation, the story came out. Did I tell you that the piece de merde is the trauma director at Shore Memorial Hospital.  Well all day I was trying to figure a way to get the Current police blotter to the President of the hospital.

 

Well, Roy is friends with the vice president of the hospital and will get it there. Ha Ha Ha Haaaaaaa.   Don't you love the karma of the universe - it is so helpful.  Roy bets that the administration have probably already seen it.  I love when I have help with my battles.  Just lay the groundwork and watch him fall.

 

Today I remembered that the Nazi dr. Thursday refused to  renew my cough syrup RX also.

 

Thank you for the good luck wishes for Alan for tomorrow; we are grateful to have them.  Not that we want to rush our life away but this can't be over soon enough.  That is why he chose to have it now instead of having another blood test.  It just hangs over your head, weighing heavily. 

 

Yes, from everything we have read, you have it right; 100% of men by the time they are 80 get some prostate troubles.  The physician gave Alan a choice to repeat the P.S.A. or come in for the ultrasound.

 

7-27-04

What a day.  Luckily, the dr. made Alan his first patient today so he had plenty of time to stay in the recovery room and the semi-private room afterwards.  He was so brave about the whole thing. Especially when he lost about one cup of blood when he stood up the first time - hospitals leave you no dignity. I was more frightened than he was - he must have been under the effects of the anesthesia still.  We've been up since 3:00 A.M. so we desperately need some sleep now.

 

One more thing, turn on ABC on Wednesday, July 28 [tomorrow] at 5:00 P.M. or tape it.    Dr. Check was interviewed about my drug. My mugshot may be in there too.

 

7-28-04

 Last week we celebrated the 41st anniversary of our first date.  How we met was lots of luck and divine intervention, I am sure but staying together is also some work on both parts. We feel fortunate we both feel the same way about most things which is a tremendous help - whether it is a hobby or food or friends.

 

 First a report on Alan.  No results yet - it was yesterday. This is the very bad part [for us the last 3 years, when have we ever had a call from the dr. that is good after a test?  Alan better break this horrible streak].    Whoever invented this test for the biopsy has to be a Nazi.

 

Today he is more himself.  Still blood which is to be expected, they say, for a few weeks. SO he is not totally comfortable and can't leave the house.   Every man goes thru this eventually - for women they invent a test to smash their breasts between 2 pieces of glass and then one to scrap their inners to do PAP schmears.

 

Did you catch the news on 6 at 5:00 - - - the story they did was good.    My new drug is being monitored by Dr. Jerome Check [Marlton] and he was interviewed for the 5:00 news [ABC = channel 6 out of Philadelphia];  they called me in too for a few words.  We were surprised that all day they were promoting it, showing me swallowing the pill.  People started calling early.  Dr. Check spoke well.

 

A little addition to the battle royale against the un-docteur.  I spoke to my primary's office today and the nurse told me everyone was telling stories about petey.  A lot of patients saw the police blotter and NOW are talking and saying what happened to them. 

 

7-29-04

We learned today that Alan is okay. The dr. called saying all the biopsy samples were negative.  A long 48 hours.

 

Thanks for your insights on pulmonologists; we had no idea. Definitely I will be getting a 2nd opinion.  Like you we ALL agree this  SOB should be out of business; I will report him to the licensing board, for starters.

 

7-30-04

Thanks for the compliment; actually Alan is the one on the cutting edge.  He
is the one who found this terrific team of physicians that keep coming up
with new ideas for me [may they never run out].  Alan has the knack for
doing all the research.

 

When we go to the beach, we use it as our living room - it is all social.  We meet people and we sit together and catch up. 

 

 MOST people do this social thing by going out to dinner; we don't enjoy restaurants most of the time [too much food, yelling for more water or bread, usually get sick from mild food poisoning, and not good for someone with a 429 cholesterol].  We like to do social things not centered around food.  So the beach is good.

 

 We sit on chairs that have awnings and then put them under an umbrella. Ours is like a grass tiki hut - the only one on the beach.  SO people can find us easily.  We take and share snacks - the guys ride their boogie boards. We've played scrabble, we have reading time [it is nice to read and not talk all the time and I can't anymore].

 

 We all agree it is better than the days we'd take day trips to the shore, going home in all that itchy sand. Our beach has a shower to rinse off.  It is 99% of the time much cooler on the beach than even a block away.  The air off of the ocean is wonderful.  We are a short walk away.

 

8-1-04

We raised $30000.00 from the luncheon and have received proposals from physicians all over the world. We accepted one [though we'd like to accept more but are out of funds].  We chose a Dr. Saul Suster's from Ohio State [he is a brilliant pathologist].  He and his partner will identify the genes that have altered copy number in thymic epithelial tumors.  They will use the information to develop  potential therapeutic targets and agents.

We are thrilled since a year ago, there was nothing.  This is big headway.

 

8-2-04

So glad you got to view my TV debut; at least we are getting awareness to this disease......finally.  One of my sister's friends called her and said she was making dinner and heard the word 'thymic' on TV and then looked up because she had heard it in reference to me.  Name recognition is good - maybe soon people will donate to the Foundation.  Jeanne Koonce just sent a check in Larry's memory that someone gave to her.

 

8-3-04

 He doesn't have to go back to the dr. until February.  He finished his
antibiotic and now the bleeding is less too.  They took 14 biopsies that
day.  The dr. told us 8 originally but at least this way there's less chance
of missing anything.  It is such a relief that he is fine, that it feels like a weight has been removed from our shoulders.

Did I tell you that my recent blood tests came back with a 429 cholesterol.
Penthouse!

 I have received the forms from the medical licensing board in Trenton and
have typed out the pulmonologist saga and made exhibits.  Will mail them
about 20 pages as soon as I copy it.  Ha ha haaa - he doesn't expect this.
Bonnie gave me some great pointers.  You would love it.

 

Wonder what his reaction will be when he gets a copy from the Licensing Board [sometimes if I think ahead to that, I could almost not follow thru; some of these people are so nuts and you never know what they will do].  Oh well, I face cancer so I can mail the complaint. He's not as formidable.

 

I feel it is my duty to protest because so many others are too weak or ill to do it for themselves. At least the licensing bureau will keep their eye on him now.

 

8-4-04

 

We have been getting calls from such ill people since it was on  television the other evening.  I should tell people to go to Europe. These poor folks don't have time to waste 7 months getting approvals like we did.

 

8-5-04

 My HDL is about 56 so that is good - the ONLY good lipid value I had.

 

Haven't felt great lately. The coughing has become almost full time and it is getting me down. It dominates my entire mind to try not to cough which doesn't work.   We aren't sure why [it can be one of 2 things - the damage from the radiation or...]. I have tried the inhaler and last night it worked somewhat but created 2 other problems - it is a steroid and I couldn't sleep and it had me very jittery and nervous today. You fix one thing and start another problem.

 

 But worse is I had non-stop sweats for about 10 hours - I was miserable.  Combined with the sweats from the mefipristone, I was melting down.   Well, maybe we're cooking the cancer cells! 

 

8-6-04

A woman I know that owns Seashore Healing Arts [yoga, reiki, massages, etc.] told us about a Buddhist monk,   Gayuna Cealo.  He will be in Ocean City August 24 to 28.  He has a record of healings.  She is going to schedule me for 15 minutes.  $108.00.  Alan will look up his website.

 

Other than that, I am using the computer less since I find it makes me cough
more; it puts something out into the air that is an irritant. In fact, there
was a news story on this a week or so ago.  Did you see it.  But we can't
figure out what the substance is.  All I know is when we start up the
laptops, I start choking.  Have you ever heard of this before.

 

8-8-04

Today we started out by meeting one of the women from Dr. Check's office at Trump casino for brunch; she was with her daughter in Atlantic City for the weekend.  I had absolutely no appetite and couldn't eat most of what I ordered.  It must be the medicine that has killed my taste for food [even chocolate].  When I get this way I can't even force myself.  It is how I was as a kid too. 

 

The whole afternoon I really felt blah.  I couldn't do a thing - no motivation at all.  We sat on the beach from 4:00 to 5:00 because neighbors called us on their cell phone and wanted us to meet  the end of the 24 hours since I took the pill].

 

8-11-04

I'll try to write what people wrote me; don't look down that long road into
the future yet.  Who knows what they will discover in the next months or
year.  Things change daily.  It is hard to keep that in mind and I always
need reminding. One way or another you will kill the al quaeda in your body.
This is all out war.

 

Our best assets are our wonderful husbands.

 

My friend in Merion says her father always said to her,

 

"Illegitimus non carborendum est". 

 

That means 'don't let the bastards grind you down.'   That is her cheerleading message to me all the time.

 

8-12-04

I meant to tell you that I saw Roz's article [in Penn’s Gazette]; how coininkydinkal is it that the day of Alan's biopsy it was laying in the family waiting room. So I picked it up and read it - it was very good.

 

Did I ever tell you that I despise when people pronounce this word, 'nuclear' as "nuke you lar."   The fools add an extra 'u.'   I even wrote Leno about it when he did it and he announced my complaint on his show.

 

That's what Adam wrote us when we told him Alan's biopsy was fine.  He reminded us that Alan is a 'reverend.'  Do you remember he got the ministry title by signing up on the internet [similar to what Joey in 'friends' did].  The Right Reverend Al!      It is too funny thinking Alan can marry people in the state of N.J.

 

Locally, the effects have begun.  A dr. we know in Atlantic City needed a pulmonologist for his wife [she has to have a mastectomy this week unfortunately].  Because of my experience, when her dr. recommended that office, they chose one of his partners but while they were there they noticed everything going on, some of it not good.

 

Dr. Barsky told me that when his wife went back for the test, he started to follow her and the tech said he could not go back. SO they both said, "Okay, we'll be leaving now and not have the test then" [they were very prepared  after hearing my deal there].  Is that hysterical?  The tech of course, allowed Dr. Barsky back with his wife.

 

8-15-04

I need food with lots of butter lately.  So damn the cholesterol.

 

Is this the cake from last week.  Wasn't it getting stale.  I'd worry who breathed on it in the meantime and if I'd catch anything.  Sorry - don't mean to be a kill joy. Does that bother Irene at all - we don't take hand me down food anymore because I have to be so careful. One lady always wants to give us a care package AFTER she has served it to company and the food has sat around the table and many people have coughed, sneezed or talked on it.  You know that aerosol of invisible air expelled from the body.

 

I will hope no one gets sick; remember it takes a few days for germs to incubate and multiply to the point you feel symptoms.   Like you we don't take unwrapped samples...especially if other hands can reach into the tray of food.  The health watch did a story on that once and found 12 types of urine in the beer nuts at a bar. Yisch.   Hate to draw you the picture but what happens is people go into the bathroom and do not wash their hands afterwards.  Then they put their germ-filled hands into the common bowl and the germs come off onto the neighboring foods while they are rooting around for the perfect nut.  

 

We appreciate you sending us the scoop on proton radiation.  It sounds so much better than what I had. It takes millions to set up.  But if I'd need radiation again [if this new drug doesn't work], at least there is a better option.

 

8-17-04

 For a year my constant coughing  is really getting me down, so I broke down last week and finally used the Advair that the awful pulmonologist recommended.  Did I tell you about this malicious 'doctor' near here that should be avoided at all costs.

 

I never did this before but I had to report him to the licensing board in N.J.,  the medical examiner.

 

Thank you for donating some positive energy to me; that is all we have on this earth is energy [none is created or destroyed, right? fellow scientist].   All matter is the same as a million years ago, none created or destroyed, then reincarnation is feasible.  We are just reshuffled and reinvented. Profound.

 

8-18-04

 And ALan appreciated the compliments on the latest newsletter.  Now he wants to try to apply for some type of grant.   I suppose we have built up the Foundation from a multitude of experiences we had in our various jobs.  It has been rewarding so that makes us want to do so much more.  Did you get to go on the Forum that Alan created.  The thymic patients get on daily and exchange stories.

 

  The people we hear from that have this are the kindest souls.  One man just wrote in that he has thymic cancer in San Francisco and another lady [the wife of a thymic cancer patient] wrote to him on the forum and said she lives in San Francisco and would be happy to bring him food, etc.